My LLMD is wanting me to get tested for MCAS, but I'm doubtful I have it.
I read Dr Afrin's book in which he tells the stories of patients he's had and I don't think I have anything as severe as them.
But the biggest thing to me is that antihistamines are supposed relieve symptoms but they cause problems for me.
Antihistamines leave me wired and anxious. I've known this for years and if I'd known that they were going to use benadryl for my last colonoscopy I would have told them not to. I found out later.
I know I have high histamine from testing and genetic reports so try to eat low histamine. I don't get anaphylactic shock but do experience foods that irritate my mouth/throat and make esophagus ache.
I'm also gluten sensitive so am gluten free and some foods and NSAIDs give me fluid under eyes.
Does anyone know if my reaction to antihistamines would rule out that I have MCAS?
Posted by unsure445 (Member # 15962) on :
Others with mast cell react to antihistamines also so this doesn't rule out the condition.
It also can take 3 weeks of daily antihistamine use for them to make a difference/take down symptoms when you start taking them. Its not an immediate improvement.
Posted by Marz (Member # 3446) on :
I wouldnt make it to 3 weeks because I would be so wired.
I'm wondering if rather than do the test which my insurance covers but would cost them $3000, if cromolyn could be tried? Or something else.
Maybe that's expensive too though. This MCAS is even harder to understand than Lyme and cow's!
It just seems odd to me that if I'm high in histamine and i am--that antihistamines do that to me!
Posted by hiker53 (Member # 6046) on :